“It’s not that our opponents are ignorant, it’s just that so much of what they know, just isn’t so.” –President Ronald Reagan

Many days it can be frustrating to know what I know about health, autism, sensory issues, allergies, their causes, and live in this society. There is so much misinformation about treatments for autism and developmental delays, etc. The main push is: go do some therapies like ABA, physical therapy, occupational therapy, speech therapy, socialization, etc. And the sooner you get those therapies for you child, the greater chance there is for a better outcome. Let me be clear about this – I am NOT against these therapies. They CAN be helpful. However, they are only minimally helpful if that is the ONLY treatment these children get. If these children get other treatments FIRST, or even simultaneously, these forms of therapy will be exponentially more helpful. But, often times these therapies are the only thing moms hear about to help their child.

First we must get rid of the things in the child life that are harming the functioning of the brain and body. Things like food allergens (casein, gluten, and others specific to the child), foods that in general harm the body and alter how it functions (sugar, caffeine), and chemical inputs (perfumes, cleaners, detergents, soaps, lotions, etc that are all toxic). These are all things that can be done at home relatively inexpensively. And these are very critical first steps, and can be done even before (or without ever) starting treatments with a doctor.

Second, we need to address what is physically wrong with the child. For this, additional professional help is needed. Is the child’s head misshapen or are some of the cranial bones overlapping or out of place? (If so, the brain is likely not getting nutrients to all the right places in adequate amounts). Is there an overgrowth of yeast? Does the child have heavy metal toxicity? Does the child have chronic diarrhea or constipation? What does the child’s vitamin/mineral profile look like? And other similar things.

These issues are critical to treatment, and all the therapies (physical, occupational, ABA, etc) in the world will not correct them. Not only will it not correct them, until these issues are addressed, the brain’s functioning is compromised and the therapies will only be minimally effective. They may show some good results, but if these things were addressed the results would be so much more!

So the media is celebrating new advances and cutting-edge therapies for autism. For example, just last week the Today Show did a special on how they are now using robots to teach autistic kids socialization skills. It’s so cutting-edge and exciting. Before there was no hope for treating autistic kids, but now there are robots!!! And there has been 60 million dollars donated to this research about using the robots. But they are missing the boat. If the things compromising the functioning of the brain and the physical problems are dealt with FIRST, then the therapies (including robots) utilized – to teach the kids what they missed learning when their brains couldn’t function properly – that would be a breakthrough!

It isn’t that these scientists, doctors, moms are ignorant, not at all, in fact they are very knowledgeable, they just have wrong information or are missing information. Ronald Regan said it perfectly, “so much of what they know just isn’t so.”

The cranial sacral treatments we did from December through February helped tremendously, as you noticed in my posts in February. We started the anti-fungals the end of February and everything fell apart. He regressed terribly. His speech didn’t disappear, but he stopped advancing and regressed some and his behavior went downhill – lots of tantrums again, head banging, wanting to be held and carried a lot.

Now we’ve made it to April and he has been off the anti-fungals for 3-4 weeks. He is pretty much back to where he was the middle of February. We’ve been continuing the cranial sacral appointments all this time. He’s doing great again. He is gaining speech again and his behavior is improving. Mondays cranial sacral appointment (Dr. R.) made a tremendous difference. The appointment Monday was one like I had never seen before. Jordan went through 3 stages in the appointment. He was quiet, sullen, and shy at the beginning (fairly normal for recent weeks). He got a little fussy and cranky when Dr. R tried to evaluate him and wouldn’t cooperate. Dr. R then held him by his ankles upside down, which Jordan thoroughly enjoyed. Dr. R would relax his hold on one leg and then switch, basically his legs looked like he was walking but upside down. The more he did this you could actually see Jordan’s range of motion increase and stiffness in his body decrease. His back and neck arched and extended more each time – a very good thing. Jordan was okay while upside down and Dr. R did this for a few minutes. After he put Jordan down, upright, within a few seconds Jordan was very aggitated, fussying, staying close to the ground instead of standing and walking, and banged his head on the lightly carpeted floor twice, hard, a couple minutes apart. After the second head banging, Dr. R sat Jordan on his lap and worked on Jordan’s skull for quite a while. When Dr. R was done, Jordan was happy, jovial, and bounced off to play with the toys in the room. The change in him was amazing! This week, he has not banged his head once, not even during his tantrums. In fact, I even saw him start the motion once and stop himself before his head hit the floor 🙂 This is a very encouraging and pleasant change. It was horrible watching and listening to his head bounce off the floor like a bowling ball. However, I had long since given up on stopping him. No matter how many times I’d stop him and pull him away, try to hold him and restrain him, he’d fight me until he got away and head straight for the tile floor. Hopefully our days of head banging are going to be few and far between, if not gone forever!

Although I say he’s pretty much back to where he was the middle of February, there are some differences. With his speech, in February he was saying entire statements when he combined words like, “Read a book” or “There you go” (as he handed me his empty plate) now he is missing connection words, but gets more main words such as, “Mommy, come help down chair” (when he needs me to help him down out of his chair). He is using more variety in his language and can communicate just about anything he wants to now! He’s even started with the, “Watch, Mommy” for all his new (or not so new) feats. You may not realize why this phrase is exciting. Not only is it great he has the language, it’s really great because it means that he’s far enough away from me that I can “watch him” since I’m not holding him, or more acurately, he’s not clinging to me screaming like banchee every time I attempt to put him down. He’s actually off on his own playing! Very exciting stuff! You just need to know a few quirks like “strawberry” can mean “strawberry”, “blueberry”, “blackberry” or “raspberry”; “juice” could mean “juice” or “water”. With his behavior, tantrums, fear, etc he is not quite back to where he was in February, he’s still more moody and sullen, but in the last week has made great strides in the direction of happiness and independence – thanks to his cranial sacral tx on Monday! It’s incredible to hear his great belly laugh quite regularly 🙂

I had been going to give the prescription anti-fungals one more try so that he could get the LDA shot, but he has been doing so great off of them and they affected him so severely we have decided to abandon that line of treatment completely and go for a more natural route. We will keep it in the back of our minds as a last resort should we need to come back to it. Currently, we are giving him a rest this month, keeping up his diet and cranial sacral appointments, and doing his brain therapy exercises while we wait for the consult with the Pittsburgh doctor the end of April. Oh, we did just start (this week) a new natural detox supplement called Neurocleanse. So far we have seen good results (a substantial increase of horribly stinkin’ poop which is great – that means his body is getting rid of bad stuff) and no negative reactions!

So that’s the latest, thanks for keeping up and praying for Jordan and us!

Jordan’s chiropractic neurology/cranial sacral treatments are going so well. He has been in treatment just over 2 months now. Every week holds new advances. He’s doing so great, catching up to what is appropriate for his age at lightning speed. Each week I think we have arrived and his advances will plateau and then a whole additional realm of development seems to open up. In the last 2 months, I would say he has had at least 7 months worth of development. In the last two weeks, everything has come together.

Communication. Last week he started adding certain phrases into his regularly used vocabulary – “Thank you, Mommy”, “Here you go, Mommy”. This from a kid who 3 months ago couldn’t say “Mama” or “Dada” and would just stare at me when I asked, “Where’s your nose?” For the last few weeks, I’ve been writing down the words he adds to his vocabulary. He’s been averaging about 2 per day, which I’ve been ectastic about! Between 15-18 months of age, not only did he not add a single word to his vocabulary, he lost many words that he had been proficient in up to that point. Then last Wednesday, he added 9 new words or phrases THAT DAY, whoa! He’s adding words to his vocabulary so quickly I quit keeping track this week!

Independence. Wow. For nearly two years now (he’s 23 months old) he has been glued to me. If I left the house without him, it was cause for a major meltdown. This didn’t just apply to leaving the house – walking to another room or setting him down instead of carrying him were certainly cause for great distress! For months (actually an entire year, from about 5 months old to around 17 months old), I had my kitchen set up so I could do everything one-handed because his backside was attached to my left forearm. My arm was like his permanent chair and should he be removed for any reason, terror-stricken frenzy would ensue – for hours. The up side was that I had the greatest bicepts of my life!

This week, his grandparents took him to the park. As he RAN out of the house, he turned and said, “Bye, Mommy” – no tears, no wailing, no flopping on the floor acting as if the world was about to implode, not even a frown, actually he was smiling. A joy-filled face excited to greet this day’s adventure!

Who is this little guy? He has changed so rapidly I hardly recognize him. I’m still shocked by occurances such as this. 🙂

Happy. A couple of days ago, Jordan awoke from his nap. How do I know when he is awake? Well, for months (perhaps about 20 of them), I would hear crying or screaming and know my little guy was no longer slumbering, but was now begging (or demanding) to have Mama’s company. The last couple of months this has gradually changed to hearing babbling, or more often the repeated mantra, “Mommy, mommy, mommy, mommy”. But on this day, emanating from his room I hear: “Ashes, ashes, fall down!” (crash) “Ashes, ashes, ashes, fall down!” (crash) “Ashes, ashes, ashes, ashes, ashes, ashes, ashes, ashes, ashes, fall down!” (crash). How cute. And not just cute, but amazing! He’s singing. He’s remembering. He’s understanding a game. He’s developed an understanding (and enjoyment) for interacting with others! As soon as I got him out of the crib and he joined his big brother in the living room, he grabbed his brother by both hands and started pulling him in circles saying, “Ashes, ashes, ashes, fall down!” WOW. He initiated a game with his brother. Amazing! This is definately a new thing. And of course, big brother was delighted to fill in the rest and round and round they went, “Ring around the rosie…” This mama’s heart is overflowing with joy.

A Brave New World. Last weekend we went to the tractor supply store looking for stock tanks for the aquaponics system we are building (more about that in the future). Now, we’ve been taking him to stores for a good part of his life. But this time, it was totally different. There was an entirely new world just waiting to be discovered! This kid went crazy (well not literally), but his eyes took everything in, wide with wonder and excitement. His feet ran all over, climbed on things, crawled inside things, wanted to go in 5 directions all at once. There simply was not enough time to discover all the incredible things there were to discover in a hardware store!

Three months ago, the trip would have insited dull lifeless eyes, unless he saw anything round then he would have repeatedly said, “ball, ball, ball’ and if he didn’t immediately get the ball (which he rarely ever did) would have been followed with tears and angst. He would have had to be carried the entire time in the store, as he would not have wanted to walk or to be that seperate from me – even so distant as holding my hand would have been too far. The time limit on the trip inside the store would have been about 7-10 minutes before complete and utter misery would have set in, and with it squirming, fussing, flailing, and all-out meltdown, effectively ending the trip. But not this day. This day, the hardware store may as well have been DisneyWorld! My son has woken up. He is not just functioning, he is participating. He understands there is a world around him and desires to observe and take part in it, discover it, have an adventure. The fear has been forgotten, the world awaits!

A Great Debt of Thanks. I must extend a great huge “Thank You” to Dr. Rosenthal, and those words just don’t cover it. He has unlocked my hidden little boy. Two months ago when we walked into Dr. R’s office Jordan was sullen, unhappy, fearful, full of pain, unsure of everything in this world; screaming was his means of communication – and I’m not just talking volume, I’m talking content as well. He would scream and it was my job to figure out what was wrong or what he wanted. My little boy was trapped behind a wall of pain and unable to comprehend the world around him or interact with it. Dr. R has unlocked him and set him free. He is smiling, curious, joyful, is so incredibly sweet, talking, laughing, communicating his emotions and desires, and is running to meet life and the adventures it holds! Dr. R, thank you for introducing me to this incredible little boy, giving me the opportunity to truly meet him, my son.

Cranial sacral is amazing!! I had no idea how it could help or what all it could do. Course, we have an amazing doctor who is MUCH more than a cranial sacral specialist or chiropractor, and that’s always an advantage ;). I didn’t realize in what ways and how much cranial sacral was helping until our 4th week (and 6th treatment) into it, and after we’d been away for a week and a half through Christmas and New Years.

We went to a beach house on the Alabama coast over the holidays for 1 week! That was great, what wasn’t so great was that Jordan went backward in some of his progress and even developed a couple new things he had never done before that are classic autism behaviors (although he’s not autistic) – walking on toes, flapping hands when he got really excited, and opening and shutting cupboard doors for an inordinate amount of time. Now, he only did each of these things once or twice , but I definately noticed and it really scared me. He also got really crabby and fearful. Fearful, like, if he was not being held by me he’d just scream – forget any independent playing on his own, or being able to make dinner with both my hands and arms available – no, one was always full with him, that or he would be clinging to my legs screaming. These irritable, fearful, dependent behaviors were very common and continued for many many months not so long ago, so I didn’t really notice them creap back into our lives. We attibuted it to the molds and mildew around the house, and the chlorine from the pool he was swimming in almost every day and how those were affecting him.

Come Thursday after vacation and his cranial sacral appointment. The doctor did some adjusting and stimulation…I don’t know just what…but as we were walking out of the office he said a new word (hum, hadn’t heard one of those for a week). We got outside and he bounced happily down the path – alive, alert, happy, coordinated, not clinging to me. By the time we got home he had said 3 new words! We walked through the door and he ran off to play – ran off, by himself, hmmm wow! I thought I’d check my email quick. He came up behind me where the bookshelf is and said “Read a book” as he pointed to the bookshelf!! Wow, a whole phrase, and he pointed! A month ago, he couldn’t even point at things he wanted. He would tug on my shirt and indicate a direction with his arm, but not a pointed finger! And then, he patiently waited while I finished my email (and without me holding him), whoa! If I didn’t know better, I would have thought I’d walked out of the doctor’s office with a different boy than who I went in with – a much happier, alert, active, coordinated, confident one! These great improvements didn’t stick at 100%, and there was a little regression through the following week, but I’d say overall, he retained up to 65% of these for the week.

Friday, we got the remaining test results and treatment plan from the allergy specialist and DAN! (Defeat Autism Now!) doctor. In addition to his leaky gut and systemic yeast overgrowth, it confirmed what we knew with his gut bacteria – he has lots of bad bacteria, and not much good bacteria, has lots of inflammation (from allergies), and the big one – he has heavy metal toxicity.

That brings us to his treatment plan. We’ll work on fixing them in this order: Correct his GI issues (kill yeast/heal gut/absorb nutrition), treat allergies, detoxify (chelation). So, we came home with some supplements – probiotic, antifungal, cod liver oil, enzymes, and L-Glutamine (an amino acid that heals the gut).

So, we’ve been casein free since Jordan was 4 weeks old, but just went gluten free 2 weeks ago. We started his cranial sacral treatment at the same time, so I can’t say for sure which has made the difference, or they are both helping (my guess is they are both helping). And, guess what? Astounding things are happening!

In 3 weeks Jordan went from being in the 25th percentile on his height to being in the 50th percentile! Whoa!! (I think that growth is due to the cranial sacral work.) He went down in his weight – from the 10th to the 5th percentile. But, he did have the flu for an entire week and didn’t eat or nurse for 4-5 days. He lost all the weight I had worked for months to get on him. He was so skinny and scrawny 😦 BUT, in the last two weeks, since going gluten free, he looks like he has put back on all that weight and more. His belly looks pleasantly plump now instead of bloated!

And for the really great news: one month ago he couldn’t say Mama or Dada. On Christmas Day, I walked by him and said “Hi, Jordan”. He looked right at me and without hesitation replayed, “Hi, Mommy”!!!!! He had never put two words together before! The next day, Jonathan and I were in the kitchen and the boys were playing in the living room, Jordan starts wailing (a hurt-type of cry). I look in to see Josiah near him and ask, “What happened?” no answer. Jordan toddles over to me for comfort. I look at Josiah and again ask, “What happened?” And from Jordan I hear, “I fell down.” Astounded, I ask him, “Are you okay?” and he replies, “Uh-huh”. WOW!! His first sentence! Not only that, it’s the first time he’s ever said the words “I” or “fell” or “uh-huh”. In fact, it’s the first time he has ever referred to himself, and he used a pronoun! Also, it’s the first time he’s answered a question with an affirmative answer. WOW!

The next day (or night – actually), we are in the car traveling to Alabama. And I hear giggles from the backseat – and, no, my mind is not playing tricks on me – I glance in the rearview mirror to see the boys playing a hand game with each other (the only playing together they’ve ever done is “chase” consisting of Jordan chasing Josiah through the house, or Josiah giving Jordan a wagon ride outside). They’ve never played a reciprocal game together before!! And then their hand game turned into another game! At one a.m. we told them it was time to go to sleep, but they were having so much fun together, we just couldn’t enforce it and let them play together until two a.m., when we finally stopped them and made them settle down and sleep!!!

I sat in the front seat teary-eyed for hours, counting my amazing blessings, overflowing with the joy of enjoying my children, knowing that Jordan is going to be just fine. A long road ahead, but it sure is nice to be getting to see more of his true personality and not the one altered by alleriges and health issues that we’ve been seeing for most of his life.

Why Gluten and Casein Free? Well, the reason for casein (dairy protein) is two-fold. The first is easy – he’s allergic to it. The second, (and there are two different theories on this, but this is one of them) and the reason we need to avoid gluten too, is that his body doesn’t break down the proteins properly or completely, resulting in partial proteins, called peptides, going into his blood and therefore, into his brain where it has an opiate effect. So, when he eats these, it’s like being on an LSD drug. Is it any wonder his speech was so delayed? And, long-term exposure can cause permanent brain damage. He is so young, it’s unlikely that there has been any peranent damage.

So, that’s our great news. The last month has contained so many amazing advancements I can’t even remember them all, let alone write them all down. And, we haven’t even started treatment through the autism/allergy specialist yet. We are still awaiting test results, so the treatment plan isn’t formed yet. That will come next week. Praise the Lord! Thank you for praying and caring!